Life, Autism, Disability, and More

Anti-Filicide Toolkit

Vigil.  Image by George Stojkovic via freedigitalphotos.net

Vigil. Image by George Stojkovic via freedigitalphotos.net

According to dictionary.com, filicide is

  1. a person who kills his or her son or daughter
  2. the act of killing one’s son or daughter

ASAN, the Autistic Self Advocacy Network, is offering an anti-filicide toolkit. It’s both horrifying and necessary. In fact, according to ASAN, since 2010, more than 70 people have been murdered by their parents.

“A parent kills their disabled child. The media portrays these murders as justifiable and inevitable due to the “burden” of having a disabled person in the family. If the parent stands trial, they are given sympathy and comparatively lighter sentences, if they are sentenced at all. The victims are disregarded, blamed for their own murder at the hands of the person they should have been able to trust the most, and ultimately forgotten.”

The advice in the toolkit is extremely helpful, but it’s also extremely sad. The fact that people have to be told that they should condemn the murder and mourn the victim…that it’s bad to imply that it’s better to be dead than disabled…that filicide should not be called ‘mercy-killing.’

Why do we need to tell people these things? Why isn’t this common knowledge?

Go and check out the ASAN page. Read their toolkit. Share it. Make it common knowledge.

Can’t we all just get along?

Bowling practice!

Bowling practice!

I know, I know, I just can’t shut up about the whole tolerance thing. But I really can’t. It’s too important.

And I was reminded of that back in December at the tournament for Special Olympics bowling.

It was an interesting morning. We got there on time, found out what lane Simon would be bowling on, and then settled in. Minutes after we got there, the boy sitting next to Simon pulled down his own pants and began masturbating. Whoops. The aide with him stopped him, and the boy sat back down, seemingly okay again. Time for the pledge of allegiance; everyone stood, the pledge ended, and the boy whacked Simon on the head. Hard.

For a second, we thought Simon wasn’t going to respond to it. He will sometimes get hurt, and then ignore it, like a toddler who falls down and only cries if a parent says something about it. This time, though, I think it was too much of a hit, and he started crying and getting upset. Not that anyone can blame him. I mean, if I’m standing there saying the pledge and someone whacked me on the head out of nowhere, I think I’d start crying, too.

The aide with the other boy pulled him away, and promised they would keep him away from Simon. We said fine because, hey, it happens. Patrick went down to the seats and held Simon, trying to calm him, and it took a while, but eventually, Simon seemed to be doing a little better. But he still wanted Patrick down there with him.

Another mother was also down with her son. No one was bothering anyone. No one was complaining. No one was unhappy (except for Simon, who was still getting over the random smack).

Then a different mother came over, looking for a Special Olympics official. She was unhappy because there were parents down with the children – how dare that happen! She asked an open question about why the parents were down there, and I explained what had happened with my son and that my husband was there with permission and good reason.

“Well,” she huffed, “what about the mother down there? Who’s she there for? Why’s she down there?”

I told her I didn’t know, and she continued her mission, finding someone to complain to about the nerve of some parents, and succeeding in getting the other mother removed from the sitting area.

I don’t want to fall back on a favorite saying of a friend of mine, because the saying is completely inappropriate, yet somehow it makes me giggle when I apply it to this situation. The saying? Snitches get stitches.

Really, I don’t think she should get stitches, but I do wonder why she felt the need to police other parents and other children. Aren’t we all in this together? Aren’t we all just trying to get along, get through, get happy? Why would you try to make someone else – and someone else’s special needs child – unhappy? Why?

Now, to be fair, I do understand that she was looking for just that: fairness. She didn’t want anyone getting special treatment. But sometimes the rules, especially for kids with more severe problems, are hard. Not being allowed to have a parent or aide with them can make it very difficult for them to compete. The bowling alley is loud, it’s overwhelming, and it’s very, very busy. The kids need all the support they can get. Yes, you want your kid to win if he or she is the “best,” but what about going with the theme of Special Olympics? If I cannot win, let me be brave in the attempt…

Worry, worry, worry…

I belong to a lot of mom groups online. They range from funny to scary to informative. In one of them, though, there was recently a post that first made me giggle and then made me think. Sadly, it has been deleted, so I can’t share a copy of it here, but I wanted to at least share the content.

A mom posted because her mother-in-law had warned her that she might be turning her son gay by painting his toenails. The mom felt that what she was doing was okay because it was only his toenails, and she only let him pick from green or blue. She wanted input on if this was acceptable behavior or not.

I had to wonder – what about painting his fingernails was going too far? Would he suddenly snap and start liking boys? And what about the color choices? If she let him choose pink or purple, would he start cross-dressing? What kind of rules had she created, and what was the logic behind them?

I went back to look at the posting again because I wanted to see what advice the other moms had offered up to this woman.

As for me, I hadn’t – and didn’t plan on – leaving any advice because it would have been wasted.

Anyone who worries that they will “turn” their child gay – honestly, anyone who worries that their child will be gay at all – has their own set of issues, and they aren’t going to listen to me.

But maybe you will.

Let me tell you a story.

Be careful!  Looking at an attractive man might make you gay!  Image stockimages via freedigitalphotos.net

Be careful! Looking at an attractive man might make you gay! Image stockimages via freedigitalphotos.net

When my son was about two or three years old, he found a greeting card at the store that had a picture of a super-muscled up man, naked from the waist up. My son loved the card. We bought it for him, and he would carry it around, propping it up wherever he was so that he could stare at it.

We didn’t worry about it or stop him from looking at it in fear it would “make” him gay. We didn’t worry about it or stop him from looking at in case he was feeling same sex attraction (albeit at a super young age). What we did worry about was how his autism would affect his future relationships if he continued to have the same level of communication and sensory issues that he already had, as well as other problems that we knew he might run into as he got older.

Because, let’s just be honest here, what’s wrong with being gay? How is it bad? Why is it something to worry about?

Worry about making your kids judgmental.
Worry about making your kids cruel.
Worry about making your kids insecure.
Worry about making your kids rude.
Worry about making your kids ignorant.
Worry about making your kids assholes.

Those are all valid thing to worry about. Worry about them.

And this is why we can’t have nice things…

now watchI sit here in the cafeteria of my son’s old elementary school at 6:45 at night. There are three lunch tables set out by a very kind and helpful janitor. There are seats for 12 at each table. There is plenty of room for kids to run and play around the room – there’s even an empty stage. And there’s me.

Why am I here?

I’m in charge of the new parent-led support group. The group that’s meant for parents of children with special needs. The children don’t even need to be in the school district. They can be in any local district. Or a non-local district. Home schooled. Or even too young for school but wondering what will become of their child when that child is school age (which, in the world of disabilities is 3, the age when PPCD starts and ECI ends…and if those initials sounds wrong to you, you might live in a different area or state, but the age is probably the same: it’s when the early childhood intervention ends and the pre-school begins).

So we cast a pretty wide net.

Flyers for this meeting went home with parents about a week ago. I posted in a bunch of FB groups. I even sent a mass email to anyone who gave me that email address at the last meeting or at the school district’s “ability fair” back in October.

And yet…I’m here alone.

I guess I shouldn’t complain too much that no parents showed up.

Our speaker is also MIA. She’d contacted us a few months ago, asking to present to the group. We got her scheduled with the date. Then I gave her the time and the place. Never heard from her. I tried to reach her today for a last-minute confirmation. Nothing.

Which means that I’m sitting in the cafeteria, alone. No parents. No speaker.

If you ever wonder why districts/schools can get away with doing so many bad things, giving students sub-standard services, treating special needs kids so poorly…I can answer the question with my lonely presence here tonight.

People – parents – don’t put in (or can’t put in) the time and effort.

And on one hand, I get that. I really do. It sucks to not be able to find even a single hour to get to a meeting about your child’s future. But, on the other hand, it’s kind of like voting. How can you complain if you don’t show up?

Sadly, I’ve seen this happen before. Many, many years ago, before our school district’s special ed department was as fantastic as it is today, we had to fight with them (getting a lawyer and all) because they were trying to do something not in our son’s best interest. It really wasn’t in any child’s best interest, but it was the easiest thing for them to do. At the time, we tried to rally support in the fight, to get the other parents involved. None of them were interested.

Our effort made a different – our son got a better end result, and we got an absolutely fabulous new head of special programs.

But as I sit here tonight, I try to think good thoughts. Instead, I flash back on an accidental meeting I had with another mother about eight years ago. It still haunts my head.

We were both picking up our then four-year-olds from their afternoon pre-school. Her son seemed to be very high-functioning, so I asked what his diagnosis was – I thought maybe he was Asperger’s.

She looked at me, confused. Then said, “Oh, I dunno. ADD or something.”

Well, the class was only for kids on the autism spectrum, so while her son might have had ADD as well, I suspected that what she actually meant was PDD-NOS. Not that she knew that. I’m still face-palming over that afternoon.

Anyway, the point is: the evening was a bust. And a reminder – I hope – to parents and families to do all they can.

And now I’m at home, posting up this blog, and drowning my sorrows in hot chocolate and popcorn along with a really bad horror movie.

Seriously – just don’t murder anyone

Murder is Bad

Do I really need to say this? Apparently, the answer is yes!

I don’t believe I have to write about this.

Again.

Another parent has murdered their child.

Again.

Another person (this time an award-winning autism blogger) questioned “how much a parent who has ‘reached the point of desperation’ can be blamed.”

Again.

I don’t want to be picky about this, but I’m going to have to be.

If you’ve reached your breaking point, get help. If you have to abandon your child to the state and face charges for it, then take that option.

Murder is not an option.

I don’t care that the blogger said that “you have to wonder what happens that an otherwise loving mother can feel like this is the only option or that this is the best option.”

No, you don’t have to wonder. You know – she’s feeling beyond overwhelmed, and she probably has some sort of mental breakdown. I get that. It happens. But even then, it’s murder. And in this case, the murder seems to have been at least partially planned. The mother, on YouTube, said that she was thinking of “pulling a Thelma and Louise” before she tossed her kid off the bridge.

It also doesn’t help when “experts” like Dee Shepherd-Look (a psych professor at California State University) make statements like, “quite frankly, I am surprised this doesn’t happen more often…these children are really unable to be in a reciprocal relationship and the moms don’t really experience the love that comes back from a child.”

What. The. Fuck.

Now, I know that I may be in the lucky group. Simon loves hugs, he loves attention, he interacts (albeit in very limited ways). But even when that interaction and communication was more limited than it is now, I would never consider murder as an option.

Do we also consider murder as an option when someone is deaf? Blind? In any other way impaired? I mean, what is the deciding line for it, in the opinion of this “expert”? Who gets a free pass to kill a child? Because if it’s just when you hit a certain level of frustration, I think every child would probably be dead before the end of their teens.

Murder is not an option.

Autism is not – and should not – be a death sentence.

Oh, and go sign this petition!

Size Doesn’t Matter

Halloween 2013

Halloween 2013

What’s the cut-off age for Halloween?

When I was growing up, I didn’t worry about it. No one really commented on it (to me anyway), and as I got older, my costume got more complex. When I was 17 and dating, my boyfriend – now husband – actually made me up as a car accident/fire victim, going so far as to cover an eye with a patch and making me look all bloody and raw and burned. It was awesome.

But nowadays, I hear grumbling. I hear people complaining about kids who are “too old” or “too big” to go trick or treating. There’s the old joke about “if you can shave, you’re too old to go trick or treating.” The thing is, some boys start shaving when they’re 12 or 13. Is that too old to trick or treat?

The real worry that I’m bringing up here isn’t actually about general trick or treating. It’s about Simon.

He’s 12 this year. He’s not exactly small for his age, either. He’s in the 6th grade (should be in the 7th, but he was held back a year in kindergarten), and he’s definitely going to need to shave within the next year or so. Puberty is setting in.

He loves Halloween, though. Super duper loves it. He just brought it up to me again, and I had to tell him (for the eight-thousandth time this week) that it is on Friday, and that we can go trick or treating after school. The actual plan is to go trick or treating at the mall after school, and then hit the neighborhood around dinner time.

Will he be able to go?

Will people make snarky comments? Refuse him candy and other fun Halloween goodies?

I don’t know how he’ll feel about it next year, but what if he still wants to go? Will we have problems? Will we not?

I hate to quote the Doors, but the future is uncertain…and is the end of Halloween near?

Half-Decorated for Halloween

halloween
I love Halloween. Looooove it. It’s probably my favorite holiday of the year (other than Christmas because, well, Christmas…).

I’m one of those people who can’t decide if ‘Nightmare Before Christmas’ is meant to be for Halloween or Christmas. Both of them are just so awesome.

Because of that massive love, we normally decorate inside and outside, lots of lights, lots of scary stuff, lots of not-so-scary stuff. You get the idea. We carve multiple pumpkins. My husband puts up lights in my office, around the TV, anywhere we can fit them. We put up paper cut-outs on the doors, on the kitchen cupboards, anywhere that tape can stick.

Not this year, though.

This year, Simon has decided to become obsessed with the holiday.

He checks the calendar every day. He reminds us that “Halloween is in October.” He tells us that we’re going to go Trick or Treating on Halloween. He tells us that he’s dressing up as a blue crayon (for the second year in a row).

When we have to tell him that it’s not Halloween yet, he gets upset. He doesn’t understand waiting for it, and he doesn’t understand the count-down. At this point, he is agreeing with us; he knows that it’s next Friday. But he may also agree that it’s ‘next Friday’ next week when it’s actually that Friday.

We promise him that we won’t miss it, that we won’t let him forget the day. But he still has a lot of anxiety about it. We don’t know why, and he can’t tell us why.

Instead, we are just trying to minimize everything we can. There are no indoor decorations. We have a minimal amount of outdoor decorations. We don’t mention the ‘H’ word unless absolutely necessary, and even then we try not to talk about it without using just veiled references.

Of course, time will pass, and it will be Halloween soon, and it won’t matter in the long run if we went one year without inside decorations.

But earlier this week, Simon flipped the calendar over and told me that next month was November, and that Thanksgiving was in November. Whoops.

 


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